What is cancer?
How did you find it?
What exactly is chemo?
What the hell is hanging out of your chest?
Why do you lose your hair?
When I first got diagnosed with Hodgkin Lymphoma I didn’t know a thing about cancer. Neither did my friends. Not one clue. I was 27 - why should I?! After two rounds in cancer school, I now know a thing or two. So here are the answers to the basic questions I got asked the most. A cancer cheat sheet, if you will. Hopefully it will give you a better idea of what goes on behind the scenes in chemo land.
Please note – this is cancer through my eyes as a 2 x cancer patient. I'm not a doctor. Everyone’s regime is different and therefore may have a completely different experience.
A round of chemo during cancer #1. The days before the port or Hickman.
THE CHEAT SHEET
What actually is cancer?
A bunch of diseases identified when certain cells go berserk and start multiplying uncontrollably. There are over 100 types of cancer which are usually classified by the type of cell that initially runs amok. Eg. lung, ovarian, brain, bowel, etc.
Cancer stage?
After appointment with oncologists and lots of tests your cancer will be graded from 1- 4. One being the least scary – 4 being the most scary.
How do you know you have cancer?
I had a lymph gland the size of a golf ball pop up just above my collar bone. It’s normal to have lymph glands go up and down but this one stuck around for a couple of weeks which is a common sign of Hodgkin’s Lymphoma. The second time the lymph glands showed up on a routine check-up CT scan with my oncologist.
Different cancer pops up in a million different ways. Sometimes a lump, sometimes a change in a mole, sometimes unexplained weight loss or some unexplained pain. If your body does something weird – best to go get it checked out.
Who is on the cancer fighting team?
Oncologist
General of the cancer army. Da boss. You do what they say.
You will go and see one of these cancer specialists when your GP realises something is up. They then send you for all the tests and figure out what’s going on and how to fix it.
Oncology nurses
These are the ones that administer the chemo and are with you for hours and hours. Not only do you chat cancer, but you also talk about what you wore out on the weekend, upcoming weddings, what Brad and Angelina are up to, the Master Chef finale and share secrets like where to get the best coffee in the hospital. They are some of the warmest, most supportive people in the world. They make the scary parts not feel so scary. And they feed you lemonade icy-poles.
There are honestly loads of specialists, nurses and other medical professions on the team - but these are the two main ones I dealt with.
What are all these tests about?
PET scan
Whole body scan that detects and helps diagnose cancer. First they inject you with radioactive liquid and then put you through one of those futuristic white tube things – similar to an MRI or PET machine. It takes about an hour and afterwards, you can’t go near pregnant women or children because you’re radioactive. You heard me - radioactive!
CT Scan
Another way to check out your insides. Not as detailed as a PET scan as they can’t tell if the cancer is ‘active’ or not. Fun fact: they sometimes inject you with a liquid called ‘contrast’ which makes you feel like you’ve peed your pants.
What actually is chemo?
The cancer killing stuff. Basically drugs that target cells that grow and divide quickly – whether they be cancer or healthy cells like skin, hair and intestines. This is why you loose your hair! It comes in all types of doses and combinations depending on you and your cancer. My cocktails came in the form of an IV drip. They would hook me up for a couple of hours while 3-4 different chemo drugs would cycle my bloodstream and do cancer killing kapow.
Bags and bags of chemo.
Chemo cycles
How often you have chemo. Usually you have a dose of chemo - over one or a couple of days, and then are given some time to recover before the next dose.
During my first tango with cancer, it was once a fortnight for 6 months. I would have it on Monday and so that would wipe out most of that week with naps, nausea and general shittyness. The following week would be my ‘good week’ and I would go to work, catch up with friends and pretend I was ‘normal’. Then Monday would come around and we’d do it all again. When I relapsed, they mixed it up and I had a different plan of attack with different cycles.
Chemo land.
What are these weird things in your chest?
Port (Portacath)
This is a round metal gadget about the size of a 50 cent coin that’s surgically inserted just under the skin on your chest. It’s an easy way to access a vein to give chemo drugs or take blood. The nurses access it by a needle and the port has a tube that leads to a big mumma vein. It’s better to use a port instead of a vein in your arm because chemo is so toxic it will make your veins shrivel up like sultanas which makes them pretty useless and hard to find. No one likes someone prodding around your arm with a needle for 20 minutes – so needless to say, my little port was a welcomed addition to my body.
Hickman Line
The big kuhuna of vein access. Similar to the port but this time there are two tubes that are permanently sticking out of your chest. (I know what you’re thinking – sexxxxxy.) When they know you’re going to need a whole lot of chemo, fluids, blood transfusions, and other drugs, they pop one of these in you.
I got my Hickman just before I had a stem cell transplant as they knew I would get super sick, be stuck in hospital and need to be pumped full of fluids, antibiotics and other drugs. While I was in hospital I was hooked up to an IV drip almost 24/7. And yep – you feel like a walking science experiment.
I look stoked, don't I!?
Stem what?
Stem cells. They are very early blood cells in the bone marrow that develop into red blood cells, white blood cells and platelets. Basically, the stuff you need to make blood and stay alive.
Stem cell transplant
These cells allow doctors to blast the cancer with a shit load of chemo without killing you. (It’s like the extra life balloons in Donkey Kong.) However, in killing all the cancer it also kills all your own good cells and your own bone marrow. This is why you need the transplant to top up your supply and reboot your immune system. It seems to be what they give the naughty cancers that just won’t die.
I had a stem cell transplant when I relapsed. My high dose of chemo consisted of 7 days straight of morning and night chemo and then on the last day, I had my stem cell transplant. It was brutal to say the least and took months and months to recover from but hey – it appears to have worked and my cells are now on their best behaviour. (Touch all the wood.)
Stem cell harvesting
You can get stem cells from yourself or a donor. I used my own which meant I first had to make my body rapidly increase the amount of stem cells my bone marrow made by injecting myself with a special growth factor for about 10 days. Then once I was choc-a-block full of stem cells, they harvested them. They use a machine that sucked the blood out of one leg, spun it around in a machine, separated the super stem cells, and then passes the blood back into the other leg. They then bung cells in the freezer until I needed them after the high dose of chemo.
Have you lost your mind?
Chemo brain. It is a real thing. Some days I would get half way through a sentence and completely forget a word like ‘Thursday.’ (Apparently similar to pregnancy brain.) It was frustrating, deflating but at times, quite funny. And a perfect excuse when I would forget names, things I didn’t want to do or ex-boyfriends I didn’t want to remember.
There's still more after chemo?
Radiotherapy
Another way to kill the cancer with magic high-energy waves. This treatment is more targeted so it can attack certain areas where the tumours are lurking. It’s another sci-fi tube that you are fed through. Radiotherapy only takes 5-10 mins per day. I did it for 1 month, 5 days a week. This one doesn’t make you feel sick like chemo but can drain all your energy and can irritate or burn your skin which can be really painful.
Fun fact: I got my first tattoo from a radiotherapy nurse!
To make sure they target the specific area - you have to be strapped to the machine in the exact same position every time. They use the tattooed dots to measure your body, get you in position and literally tape you to the bed. I also had to wear a giant face/body mask – similar to Hannibal Lecter’s. Another moment of pure sexiness.
Pretty much. Minus the cops.
Have I missed anything or do you have more questions? Or did you experience something differently? Let me know by leaving a comment at the very bottom of the page.